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Patients are often critical of quality -of -life programs because health -care professionals developed them with little
Patients are often critical of quality -of -life programs becausehealth -care professionals developed them with little considerationfor the individual's needs, Susan Randolph, RN, MSN, said at asymposium on bone marrow transplantation for breast cancer, sponsoredby The Western Pennsylvania Hospital.
"Regardless of prognosis, as long as the patient is aliveshe has a right to quality of life; a right to what she wants,"she said. "It is the duty of all of us here to help her achieveit," said Ms. Randolph, Bone Marrow Transplant Coordinatorfor Caremark Inc.
Ms. Randolph advised health professionals to "ask the realexperts--the patients--what they need and how we can help. Whatis their biggest obstacle? What is their greatest joy? Our mosteffective intervention to ensure that quality-of-life and survivorshipissues are addressed is simply to listen to the patient."
In her role as home health-care provider for breast cancer transplantpatients, Ms. Randolph has found that quality-of-life perspectivesdiffer greatly, depending on such variables as marital and economicstatus, cultural experience, and age. Not everyone fits snuglyinto one preconceived plan, she said.
A universal issue for most breast cancer patients undergoing transplantationis pain, which affects them physically and psychologically. However,she emphasized that there are many physical, psychological, andsocial issues for which patients need support, advice, direction,and assistance to help them cope. These may include scarring,treatment-induced menopause in the young woman, vaginal drynessthat interferes with sex, the dying woman's concern for her youngchildren, and a single woman's concern for her changed sexualimage.
Ms. Randolph said that the isolation she felt after her recentrelocation to West Virginia heightened her awareness of just howalone many cancer patients are, and that women living in isolatedareas may simply not be aware of their options. "They maynot know about bone marrow transplants, or out-patient treatment,or home-care facilities. It's imperative that we health-care professionalslink patients up with some of the many different resources available."
Identifying Psychological and Social Needs
Ms. Randolph stressed the importance of identifying and treatingpsychological needs. Anorexia may be treatment-induced, or itmay be psychological due to depression because a patient feelsugly or her relationship with her spouse has changed.
"Regardless of the type of treatment, all breast cancer patientssay life has changed--period," Ms. Randolph said. "Noone can take away the fact that they've had breast cancer, andit has changed their hopes, dreams, and aspirations. All patientsfear recurrence. But patients who receive psychological supportusually survive longer than those who don't," she said, referringto a 1990 report by Spiegel (Cancer 66:1422-1426, 1990).
One very difficult psychosocial issue is body image, Ms. Randolphsaid, referring to the general media portrayal of women, whichis heavily biased toward appearance. Transplant patients dealwith loss of self-esteem and often have great difficulty facingfamily, friends, and co-workers after treatment. Connecting patientswith support groups and counselors can have a major positive impactin this area, she said.
Getting Women into Trials
Ms. Randolph said that most patients feel a certain bond to health-careprofessionals because they understand the treatment and what thepatient is experiencing. Ms. Randolph believes that spending timecommunicating with patients may even encourage participation inrandomized trials, so important to establishing the efficacy oftransplantation for breast cancer.
In her experience, most women with advanced disease feel theyhave a right to transplant therapy and do not want to be in thenontransplant group. However, she feels that if the importanceof randomized trials is explained fully, patients will often decideto participate. Ms. Randolph said that she uses the example ofrandomized trials in children with leukemia, which led to today'simproved life expectancy.